D-Day

Father and Son

D-Day  was a termed used by the Allied Forces when launching an attack on the shores of German occupied France, June 6,1944.   “D-Day” and “H-Hour” are terms used for the day or hour to mark the beginning of an event.

For us D-Day has an entirely different meaning than that used by the military.  Although we are fighting a war, battle by battle, D-Day for Adam is a day of Decisions:  D-Day is Decision-Day.  That day will be July 24 2012… interesting enough it is also Pioneer Day and in many ways our little Adam is a Pioneer for all of us.  More on that in a little while… here is a little catching up.

This morning one of the ladies from the research team came by to see if Adam would be up for testing.  At the time he was resting and I politely requested that she come back later.  She was very understanding and just asked if she could leave some of her equipment in the room.. we said yes.  Adam was sleeping in a little this morning as he had a bad night.

Last night I was feeling very tired by 10:30 pm and started making the evening nest, a regular routine.  Adam had not been feeling well this evening as some of the day’s events wore him down; his head was hurting more than usual, he rated it as a 8 .. this is the highest score I have heard him give.  Whenever Adam needs pain medicine the nurse will ask him what level would he rate his pain;  They based it on a sliding scale of 1-10.  1 being the least and 10 being the max… so an 8 was pretty high for him.  Adam has always had a high pain tolerance, much more than myself.

As I went to bed  at a little after 11 pm, Adam was resting from the narcotics that he was given.  I had a little difficulty falling asleep; its hard to unwind and to get your body to switch over into the rest mode.  I always leave the curtain open to where I can see Adam lying in his bed.  As sleep approached I remembered looking over at him and wanting so much to take his pain away…  wanting so much just to hold him in my arms… wanting so much for him to be some place other than here.

My wants were only wishes, unfulfilled wishes that faded into the night as sleep overcame me.  He was resting now so he should be alright.

At 11:43pm I was yanked from my sleep by the horrid sounds of the monster groaning from Adam’s mouth, stealing his vocal cords to laugh at the world once more through our son’s body.  I was trying to push the fog of sleep from my mind and at the same time my legs were trying to get traction on the slick vinyl bed that the hospital provides for parents. Through unfocused eyes I could see his head beginning to twist and shake, his arms were beginning to bang against the arm rails.  I felt like a comic book character having an out-of-body experience; My clearing mind  was already over at Adam’s bedside, but my body wasn’t moving fast enough to get to him… I just couldn’t move fast enough… why couldn’t I move quicker… it all seemed like this was happening to someone else and I was just watching.

Adam was experiencing another seizure even though he was back on seizure medications. After getting next to him I sat at his bedside totally helpless, totally exposed to my raw emotions.. I reached out, but there was nothing I could do, “Oh Father Please help him” was my private plead.  I called to Adam, pleading in a soft voice to come back… please come back son.

The seizure lasted approximately two and a half minutes, but the monster wasn’t gone, he continued to haunt Adam’s mind.  I had not seen this before, but after what looked like the end of the seizure Adam moved around rapidly and in somewhat of a panic, looking for something, but what was he looking for?   He was reaching all over his bed feeling for something as if something had been lost. I tried to ask him what he needed or what he was looking for, but there was no answer, only panic in his eyes and in his actions.  Finally after exhaustion set in he calmed down, the nurse gave him some medicine and he rolled over on his right side and slipped away.  The next morning I spoke with him about this episode :  he had no memory of any of it.

It is a thundering feeling coming out of a deep sleep into a hazed and confused world.  Your mind comes alive first, trying to make some sense of the situation; immediately your heart goes from a 45 beats per minute resting state to over 120 beats per minute in a matter of seconds. Adrenaline kicks in and you start to react.. it’s fight or flight… and your here to fight.

Tomorrow will be our D-Day, a day of important decisions concerning the course of action we will be taking with Adam’s next surgery.  Dr. Lee’s team will conduct more mapping on Adam’s brain to determine the exact location of the tubers and what brain functions they are effecting.  We will not be allowed into the room during testing as some of these test might induce seizures; once the doctors start sending electrical signals to his brain via the electrodes anything can happen.  I think this is a safety precaution the doctors take for their own wellbeing;  A parent who see’s someone inflicting pain or inducing seizures upon their child can react before thinking.

We will be deciding if the doctors will remove one or two areas of Adam’s brain. After tomorrow’s mapping we will know how close these tumors are to vital areas and what functions they control.

It is a position I would never want another parent to be in; It is a decision I would never want another parent to have to make for their child. It would be so much easier if it were me and not him. It will be a decision all of us will have to live with the rest of our lives.

Here is another way to look at it; Suppose the authorities came to you and stated that in order for your child to live he needs to have an arm cut off, you can use an ax or a saw… the choice is yours… what will it be?

I feel like Abraham and Isaac of old;  I am placing Adam on the altar to be sacrificed or at least part of him will be sacrificed. I keep looking and waiting to find a ram in the thicket.  D-Day is almost here and I don’t know if I am ready for it.

Tomorrow is D-Day and Wednesday the battle cometh (surgery).  Every battlefield has it casualties; my heart is a casualty, it  has been badly wounded, I just hope it doesn’t die in the next battle.

Adam you hold so much of my heart, you are my son, my only son… please don’t go away… Love Dad